Tag: rare diseases

on diagnosis

“When newly diagnosed the impact on the person/ family is like a bomb going off- everyone is stunned, the air is cloudy and you can’t see the way forward. You feel stuck in time, stranded, isolated, victimised, life as you know it will never be the same. The rest of the world carries on around you, and you have to find a new way to slot back into it. This is made even more difficult because nobody explains to you how to do it, when to do it, what to do if you need help, where to go for help, how to get there, who to ask when you get there.

This is even more of a problem when the condition is rare, because nobody knows about it. It doesn’t fall under any umbrella so there is no system, set of guidelines, leaflet, specialist in place that can guide you.

The McSpec house is not a football free zone. Spurs Fan lives here. As does Girl1. It’s hard to know which is most concerned with the Euro 2012 championships. All of the football, all of the time. Girl2 and I are less concerned, but keep tabs on what’s happening.

Spurs Fan spent part of Tuesday on a mini bus with other torchbearers, and was gobsmacked by their stories. The woman who was paralysed by a car accident, and went on to become a kick-boxing champion. The Olympic swimmer. The man who cycled miles there and back to run marathons, and who missed out on the 1956 Olympics on a technicality. The young carers who look after their mum. The torchbearers are the stars of the relay- forget the celebs or local Z list media types who are there to make sure there is coverage of the event. If you live in GB and the torch goes round your way, consider those thousands of regular folk who, in their own ways, are inspirational.

The world is full of ordinary people dealing with extraordinary circumstances. We all know some.

Earlier this year, three local families agreed to take part in short films about living with rare disease. These are their, gobsmacking, stories.